Ladies who are currently fighting a recurrence...
I did put a call in to my surgeon to see if I should get a PET/CT. I have a ca125 scheduled for Thursday.
Comments
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It's so hard to trust that nothing bad's happening.
I started my day in SERIOUS fear that I am about to lose the tenuous remission I've been on since mid-February. For the past couple of months, about every 7 to 10 days, I've had a pinkish tinge on the toilet paper when I wipe, then nothing at all for days. My chemo-onc just said "We'll keep an eye on it", and didn't seem concerned. But this morning there was red blood when I wiped, so I immediately called my gyne-onc and made an appointment for Monday for an internal exam. I cannot tell you the sense of DREAD I felt on seeing that blood, but I am sure that you can relate. I almost cried out loud in my surprised horror. Unlike OVC, when you have an aggressive recurrent uterine cancer like mine, besides the carbo/taxol chemo, you also undergo external pelvic radiation and internal vaginal brachy radiation as a part of your initial treatment protocol once you recover from your surgery, so this COULD be thin tissue from radiation damage. But my radiation was back in June and July of 2009, so why now?? So I am terrified that this means something really really bad. I've had a routine CT/PET scheduled for May 17th made before this ever started, and may not have any real answers until then. But I know your fear.
But please don't let your imagination go wild about digestive distress. I had almost constant soreness in my torso and had bowel issues similar to colitis when I was getting chemo after my 1st suspected recurrence. My chemo-onc said that the digestive system has many fast-growing cells that chemo is killing off right along with your cancer cells, and that almost everyone has some digestive issues during chemo. And sure enough, since I have been on this 'chemo break', my digestive issues are almost gone! And my CA125 went DOWN 8 points when I had it drawn 8 weeks into my break from chemo, showing that the INFLAMMATION in my bowels was driving it up! That could be happening with you, too.0 -
Linda....have you ruled outlindaprocopio said:It's so hard to trust that nothing bad's happening.
I started my day in SERIOUS fear that I am about to lose the tenuous remission I've been on since mid-February. For the past couple of months, about every 7 to 10 days, I've had a pinkish tinge on the toilet paper when I wipe, then nothing at all for days. My chemo-onc just said "We'll keep an eye on it", and didn't seem concerned. But this morning there was red blood when I wiped, so I immediately called my gyne-onc and made an appointment for Monday for an internal exam. I cannot tell you the sense of DREAD I felt on seeing that blood, but I am sure that you can relate. I almost cried out loud in my surprised horror. Unlike OVC, when you have an aggressive recurrent uterine cancer like mine, besides the carbo/taxol chemo, you also undergo external pelvic radiation and internal vaginal brachy radiation as a part of your initial treatment protocol once you recover from your surgery, so this COULD be thin tissue from radiation damage. But my radiation was back in June and July of 2009, so why now?? So I am terrified that this means something really really bad. I've had a routine CT/PET scheduled for May 17th made before this ever started, and may not have any real answers until then. But I know your fear.
But please don't let your imagination go wild about digestive distress. I had almost constant soreness in my torso and had bowel issues similar to colitis when I was getting chemo after my 1st suspected recurrence. My chemo-onc said that the digestive system has many fast-growing cells that chemo is killing off right along with your cancer cells, and that almost everyone has some digestive issues during chemo. And sure enough, since I have been on this 'chemo break', my digestive issues are almost gone! And my CA125 went DOWN 8 points when I had it drawn 8 weeks into my break from chemo, showing that the INFLAMMATION in my bowels was driving it up! That could be happening with you, too.
Linda....have you ruled out fissures or hemorrhoids? Constipation results in hard stools, which in turn can cause either of those, as well as resultant rectal bleeding.
Maybe a colonoscopy is in order?
Carlene0 -
Carlene: the bleeding is definitely vaginal.Hissy_Fitz said:Linda....have you ruled out
Linda....have you ruled out fissures or hemorrhoids? Constipation results in hard stools, which in turn can cause either of those, as well as resultant rectal bleeding.
Maybe a colonoscopy is in order?
Carlene
Because I had internal vaginal brachytherapy radiation as adjuvent therapy during my 1st treatment protocol, I have to use a vaginal dilator every day for 10 minutes to keep scar tissue from forming in the vagina. (no worse than putting in a tampon; really no big deal). But when I withdrew the dilator this morning, there was a drop of blood on the tip. So the blood is definitely coming from the vagina. I asked the oncology nurse today, "How can this be, when everything 'female' inside has been removed and the top of the vagina sewed shut?"; and she said "It's not water-tight up there; fluids can still drain down from there."
Recurrence at the vaginal cuff is very common for women with uterine cancer, but not at ALL common for those who have had the pre-emptive brachytherapy and all that pelvic radiation that I had. I'm so hoping it's just a late side affect of my treatment and not cancer recurring down there. But I had that radiation back in June & July of 2009, and used the dilator ever since with no blood until just recently. And I haven't been that sexually active for some time, so it's not from rowdy sex! HA!0 -
Thank youunknown said:This comment has been removed by the Moderator
Thank you for your response. thank you for remembering my boys and where I am being treated. I guess my question to you would be how long did you stay out with your intital treatment? You are obviously platinum sensitive! Congratulations on your successful treatments!0 -
sorry to hear of your concernslindaprocopio said:It's so hard to trust that nothing bad's happening.
I started my day in SERIOUS fear that I am about to lose the tenuous remission I've been on since mid-February. For the past couple of months, about every 7 to 10 days, I've had a pinkish tinge on the toilet paper when I wipe, then nothing at all for days. My chemo-onc just said "We'll keep an eye on it", and didn't seem concerned. But this morning there was red blood when I wiped, so I immediately called my gyne-onc and made an appointment for Monday for an internal exam. I cannot tell you the sense of DREAD I felt on seeing that blood, but I am sure that you can relate. I almost cried out loud in my surprised horror. Unlike OVC, when you have an aggressive recurrent uterine cancer like mine, besides the carbo/taxol chemo, you also undergo external pelvic radiation and internal vaginal brachy radiation as a part of your initial treatment protocol once you recover from your surgery, so this COULD be thin tissue from radiation damage. But my radiation was back in June and July of 2009, so why now?? So I am terrified that this means something really really bad. I've had a routine CT/PET scheduled for May 17th made before this ever started, and may not have any real answers until then. But I know your fear.
But please don't let your imagination go wild about digestive distress. I had almost constant soreness in my torso and had bowel issues similar to colitis when I was getting chemo after my 1st suspected recurrence. My chemo-onc said that the digestive system has many fast-growing cells that chemo is killing off right along with your cancer cells, and that almost everyone has some digestive issues during chemo. And sure enough, since I have been on this 'chemo break', my digestive issues are almost gone! And my CA125 went DOWN 8 points when I had it drawn 8 weeks into my break from chemo, showing that the INFLAMMATION in my bowels was driving it up! That could be happening with you, too.
The worry can get the best of us. Thank you for your support and reassurance. Hopefully you will get good news.0 -
This comment has been removed by the Moderatornancy591 said:Thank you
Thank you for your response. thank you for remembering my boys and where I am being treated. I guess my question to you would be how long did you stay out with your intital treatment? You are obviously platinum sensitive! Congratulations on your successful treatments!0 -
This comment has been removed by the Moderatornancy591 said:Thank you
Thank you for your response. thank you for remembering my boys and where I am being treated. I guess my question to you would be how long did you stay out with your intital treatment? You are obviously platinum sensitive! Congratulations on your successful treatments!0 -
Doxil gas
Hi Nancy, I have had 6 rounds of Doxil for recurrence in my lungs from uterine cancer(I come here because we are both treated the same chemo most of the time). I have the exact same problems that you are having with your stomach and I just had a ct scan last Tues. and nothing is showing new. They did find blood clots and now I am on Coumadin and Lovenox. I thought it was the Doxil that was giving me the swollen legs and ankles, now they are not as swollen as before. I think that the Doxil does a job on our insides so bad, I had the foot sores and the intense itching with it also and the dry skin. They say that the blisters can form inside the esophagus, thus the reflux, hard to swallow and tight feeling in throat. I have the reflux really bad so I take a pill for that too. I am hoping to get a break from it this week for awhile and find out if Doxil or the cancer causing the blood to thicken. The gas is awful isn't it??? I feel great on and off just like you. I hope this helps your mind a bit, I am sure it's the Doxil.
Big hugs from Oregon0 -
Hi Nancy,
It could be the
Hi Nancy,
It could be the doxil, the doxil was very very rough on my body, my gastrointestinal tract, hands, feet and OMG, my gum tissues took a serious beating, to where some tissues actually receded.
It is a good thing that you contacted your doctor, however; just to be on the safe side.
I feel you are well informed and very proactive in your health issues and pray that all will work out well.
Sharon0 -
Dear Nancy,nancy591 said:Thank you
Thank you for your response. thank you for remembering my boys and where I am being treated. I guess my question to you would be how long did you stay out with your intital treatment? You are obviously platinum sensitive! Congratulations on your successful treatments!
I'm praying for you toady, I understand the fear and worry about having symptoms. The good news is that you in good hands, and are pro-active. Keep us posted!
Love you,
Kathlen
PS I have always had gas issues when on chemo and do take some probiotic tabs that seem to help.0 -
thank youunknown said:This comment has been removed by the Moderator
Connor 6yrs, Colin 4yrs. Thank you for asking. One of my fears is that they won't remember me. I did make videos, wrote letters and put together memory books for them. Just in case....I'm such a planner. I rememer when I was initally diagnosed and waiting for my first chemo. I was in the waiting area and picked up a newsletter that is put out by the facility. The newsletter featured a story of a women who's husband was diagnosed with a rare, aggressive cancer. The woman in the story encouraged her husband to write letters to their young sons. He wouldn't do it, for him it meant defeat. She encouraged him to talk about their finances, make a will, talk about the future. He wouldnt' do it, for him it meant defeat. Well, he died and she was most upset that he never wrote those letters. I sat in that waiting room crying but I promised myself I would do that for my kids.
Actually, it's been an ongoing process for me....and therapeutic. I did videos for their birthdays: 10, 13, 16, 18 and 21. I still have to do wedding and baby. I did a video of just motherly advice. My favorite video, is the one I did talking about my cancer diagnosis and how it affected us. I want to save that one for when they are older. But it was nice to talk frankly about how devasting the diagnosis was for me and all involved and what my fears are/were. It was also nice to talk openingly to them as adults. I did journals about me and another journal just about any old thing that comes to mind. I did videos for each of my siblings and parents, and letters for them as well.
Hopefully all this hard work will be appreciated!!!
thanks for listening,
Nancy0 -
vaginal cufflindaprocopio said:It's so hard to trust that nothing bad's happening.
I started my day in SERIOUS fear that I am about to lose the tenuous remission I've been on since mid-February. For the past couple of months, about every 7 to 10 days, I've had a pinkish tinge on the toilet paper when I wipe, then nothing at all for days. My chemo-onc just said "We'll keep an eye on it", and didn't seem concerned. But this morning there was red blood when I wiped, so I immediately called my gyne-onc and made an appointment for Monday for an internal exam. I cannot tell you the sense of DREAD I felt on seeing that blood, but I am sure that you can relate. I almost cried out loud in my surprised horror. Unlike OVC, when you have an aggressive recurrent uterine cancer like mine, besides the carbo/taxol chemo, you also undergo external pelvic radiation and internal vaginal brachy radiation as a part of your initial treatment protocol once you recover from your surgery, so this COULD be thin tissue from radiation damage. But my radiation was back in June and July of 2009, so why now?? So I am terrified that this means something really really bad. I've had a routine CT/PET scheduled for May 17th made before this ever started, and may not have any real answers until then. But I know your fear.
But please don't let your imagination go wild about digestive distress. I had almost constant soreness in my torso and had bowel issues similar to colitis when I was getting chemo after my 1st suspected recurrence. My chemo-onc said that the digestive system has many fast-growing cells that chemo is killing off right along with your cancer cells, and that almost everyone has some digestive issues during chemo. And sure enough, since I have been on this 'chemo break', my digestive issues are almost gone! And my CA125 went DOWN 8 points when I had it drawn 8 weeks into my break from chemo, showing that the INFLAMMATION in my bowels was driving it up! That could be happening with you, too.
My digestive system has been terrible. I always have gas but I also have to take Milk of Magnesia to go to the bathroom, doesn't make much sense. When my cancer returned it happened the same way, I started seeing blood on the tissue and would keep telling my doctor and he said the same thing we will watch,well after a few months they did a biopsy and it had returned on the vaginal cuff. I didn't know I had a vaginal cuff. I have been on chemo every since, about 5 years. I would tell them to see now what it is that you did not want to wait. I don't think waing is ever a good thing when you have had cancer.
Hope this has helped.
God Bless,
Jan0 -
vaginal cufflindaprocopio said:It's so hard to trust that nothing bad's happening.
I started my day in SERIOUS fear that I am about to lose the tenuous remission I've been on since mid-February. For the past couple of months, about every 7 to 10 days, I've had a pinkish tinge on the toilet paper when I wipe, then nothing at all for days. My chemo-onc just said "We'll keep an eye on it", and didn't seem concerned. But this morning there was red blood when I wiped, so I immediately called my gyne-onc and made an appointment for Monday for an internal exam. I cannot tell you the sense of DREAD I felt on seeing that blood, but I am sure that you can relate. I almost cried out loud in my surprised horror. Unlike OVC, when you have an aggressive recurrent uterine cancer like mine, besides the carbo/taxol chemo, you also undergo external pelvic radiation and internal vaginal brachy radiation as a part of your initial treatment protocol once you recover from your surgery, so this COULD be thin tissue from radiation damage. But my radiation was back in June and July of 2009, so why now?? So I am terrified that this means something really really bad. I've had a routine CT/PET scheduled for May 17th made before this ever started, and may not have any real answers until then. But I know your fear.
But please don't let your imagination go wild about digestive distress. I had almost constant soreness in my torso and had bowel issues similar to colitis when I was getting chemo after my 1st suspected recurrence. My chemo-onc said that the digestive system has many fast-growing cells that chemo is killing off right along with your cancer cells, and that almost everyone has some digestive issues during chemo. And sure enough, since I have been on this 'chemo break', my digestive issues are almost gone! And my CA125 went DOWN 8 points when I had it drawn 8 weeks into my break from chemo, showing that the INFLAMMATION in my bowels was driving it up! That could be happening with you, too.
My digestive system has been terrible. I always have gas but I also have to take Milk of Magnesia to go to the bathroom, doesn't make much sense. When my cancer returned it happened the same way, I started seeing blood on the tissue and would keep telling my doctor and he said the same thing we will watch,well after a few months they did a biopsy and it had returned on the vaginal cuff. I didn't know I had a vaginal cuff. I have been on chemo every since, about 5 years. I would tell them to see now what it is that you did not want to wait. I don't think waing is ever a good thing when you have had cancer.
Hope this has helped.
God Bless,
Jan0 -
Sending you crossed fingersnancy591 said:thanks for all responses
I appreciate all the support, truly. My stomach DOES feel better. CA125 tomorrow. No PET/CT ordered yet. I let you know what happens.
Sending you crossed fingers and toes......hoping for a great CA 125 result.
Carlene0 -
No more Doxil for meHissy_Fitz said:Sending you crossed fingers
Sending you crossed fingers and toes......hoping for a great CA 125 result.
Carlene
I had 3 doses of Doxil and it did nothing for my cancer. So Friday I start three weeks on of Taxol and one week off and so on. Also twice a month I'll have Avastin. I have a feeling I/ve told you all this before. If so, it's chemo brain. I've had such pain that I'm on morphine, so that's causing me to be foggy too. Doxil was just awful for me, so I'm really glad I'm not going to have it anymore.
Avastin and Taxol really worked the first time. I hope it works this time too. I'm going to be quitting work -- permanent disability -- starting next week. My oncologist said my cancer has been at the point of being eligible for permanent disability for quite some time. I didn't know it. I just happened to ask her when she thought I might be able to go on disability and she said right now. So I'm doing it. I want to spend time with my family, my sister, my hubby, my grandkids. I'm really excited about it.
Blessings,
Marty0 -
Marty....you joined the siteMawty said:No more Doxil for me
I had 3 doses of Doxil and it did nothing for my cancer. So Friday I start three weeks on of Taxol and one week off and so on. Also twice a month I'll have Avastin. I have a feeling I/ve told you all this before. If so, it's chemo brain. I've had such pain that I'm on morphine, so that's causing me to be foggy too. Doxil was just awful for me, so I'm really glad I'm not going to have it anymore.
Avastin and Taxol really worked the first time. I hope it works this time too. I'm going to be quitting work -- permanent disability -- starting next week. My oncologist said my cancer has been at the point of being eligible for permanent disability for quite some time. I didn't know it. I just happened to ask her when she thought I might be able to go on disability and she said right now. So I'm doing it. I want to spend time with my family, my sister, my hubby, my grandkids. I'm really excited about it.
Blessings,
Marty
Marty....you joined the site the same month I was DXed. Was that around the time of your diagnosis, too?
Just for the edification of anyone else who might be wondering about SS Disability...
A malignant primary or recurrent tumor of the ovaries qualifies for Social Security disability benefits if it meets one of the following criteria:
Ascites with demonstrated malignant cells, or
Unresectable infiltration, or
Unresectable metastases to omentum or elsewhere in the peritoneal cavity, or
Distant metastases0
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